Touching Lives - February 2007

"Thank you for giving Caroll back to us"

Known as Caroll to her friends and family,
Caroline experienced her first epileptic
seizure when she was just 14 years of
age. At first the seizures were put down
to puberty, and despite repeated fits and
visits to doctors, her condition went
undiagnosed.

Caroline recalls, “Epilepsy had a major
effect on my life from the start. All the
things that other teenagers could do
were full of risks for me — drinking
alcohol, going to parties and discos with
flashing lights. I passed my driving test
before epilepsy was diagnosed, but had
to give that up soon after.”

Caroline met her husband Andy
while at school, and in 1979, when she
was 20, they married. Soon after, Caroline
found she was expecting their daughter,
Kelly. However, a difficult pregnancy led
to bad postnatal depression, and
Caroline’s seizures began to worsen.
Doctors initially attributed this to the
depression, but three years later, during
a stay in a psychiatric hospital, one of
Caroline’s seizures was witnessed by a
nurse and finally, eleven years after
symptoms began, Caroline was diagnosed
with epilepsy.

“Even after all that time I was surprised
by the diagnosis. If I’d had the tests
earlier, the truth of my condition would
have been discovered a lot sooner.
Instead, it was put down to my
menstrual cycle and pregnancy.”

Caroline was prescribed a cocktail of drugs to try and bring her seizures under control. “The diagnosis started a long
list of medication, anticonvulsants,
antidepressants. Every time a side effect
developed another pill was given. But no
medication gave complete control of my
seizures, just caused more problems.”

Getting on with life

While grappling with weekly seizures
and the side effects of these various
medications, Caroline continued to bring
up her daughter, run the family home
and even hold down a job as a banquet
organiser. It was a struggle at times, but
she always tried not to let epilepsy stop her from doing what she wanted.

After ten years on the epilepsy
medication, Caroline was also diagnosed
with Type 1 diabetes. “Every time I had
low blood sugar, it triggered a seizure.
The two together became harder to
control and doctors advised me to keep
my blood sugars higher to prevent
seizures, but this again has had side
effects and given me problems with my
feet and eyes.”

Despite her best efforts to get on
with life, the heavy medication and
continual threat from seizures eventually
forced Caroline to give up work.

“Emotionally, I became very drained. It
was difficult to have a social life and after
giving up my job I became very isolated.
I suffered low moods that made me
irritable and sometimes even aggressive,
as well as chronic fatigue, and a large
weight gain because of all the medication.

“What people don’t understand is
that epilepsy is not just a condition, it’s a
way of life.You have to live within the
limitations that it gives you.You have to
think twice before doing everyday things
like cooking, ironing and crossing the
road to avoid accidents, things other
people do without thinking.”

Help on the way

For a number of years, Action Medical
Research had been funding the work of
John Duncan, Professor of Neurology at
University College London. He was
leading a team in the development of
new MRI scanning techniques to pinpoint
the very area of the brain where a
patient’s epileptic seizures are generated.
With this detailed information, it was
hoped that surgeons would be able to
operate on that part of the brain, giving
people like Caroline, whose epilepsy did
not respond to medication, the prospect
of a seizure-free future.

Feeling at an all time low, Caroline
was referred to the National Hospital for
Neurology and Neurosurgery, where she
became a patient of Professor Duncan.
He assessed Caroline’s suitability for
surgery using the new scanning techniques
and confirmed that the procedure could
go ahead. “I was nervous about the
prospect of surgery, but I was prepared
to try anything that might help my
condition. It was not a brave decision — I
was desperate.This was my chance to
improve things. How could I not try
something that might mean I’d be
seizure free?”

Caroline underwent surgery in June
2004 to remove the part of her brain
that was triggering her seizures. She
spent less than a week in hospital before
returning home to recuperate.

“The hospital staff were very caring
and professional and really helped me through. The hardest part was the
headaches, but this was soon put right
with painkillers. I’d agreed to have extra
tests after my operation so doctors
could compare results before and after
surgery, to help patients in the future.
This was another positive aspect to
having the surgery.

“I’d say it took me about a year to
get used to the reduced levels of
medication, and the physical and
psychological changes from the operation,
and being free of epilepsy. Many of these
changes were unexpected and I did
worry whether what was happening
should be happening.”

“Personality transplant”

That was almost three years ago, and
since then Caroline has been seizure
free. “I’ve changed in so many ways it’s
difficult to list them all. I’m happier, I do
more things socially and I’ve taken up
new hobbies. Some friends say it’s like
I’ve had a personality transplant.”

Perhaps the people who can best
describe the difference the surgery has
made to Caroline are her friends and
family. Her sister Michelle says, “I watched
Caroll deteriorate over many years,
suffering the terrible side effects of the
seizures. Now we see her happy, laughing
and able to enjoy life free from fear and
depression.The operation has given her
back a quality of life that most people
take for granted.”

Her friend since childhood, Sonya
Price recalls, “Before she became poorly
Caroll was healthy, outgoing and very
sociable. Over time she changed,
becoming quiet and withdrawn. Now
Caroll’s making up for lost time: family
parties, knitting, sewing, painting, voluntary
work. I have to phone to make sure she
is at home before visiting! But I’m not
complaining.Thank you to Professor
Duncan and colleagues for giving Caroll
back to us.”

Caroline concludes, “My treatment
means that I now enjoy my life.When I
did things before it was like clockwork,
no enjoyment, just keeping occupied. My
life has totally changed. By telling my
story here, I feel I’m giving something
back to the people who have helped me
get my life back — the supporters of
Action Medical Research.” TL

Giving hope to more patients

Epilepsy is the most common serious
brain disease.Action Medical Research
is continuing to support Professor
Duncan, as he and his team work to
refine the scanning techniques to
identify the cause of epilepsy in more
patients. “Our research work to
develop new and more sensitive
brain scans is continuing apace, with
the aim that we will be able to
identify all the abnormalities in the
brain that may cause seizures, and so
direct each individual to the best
treatment,” he explains.Touching Lives
will, of course, keep you up-to-date
on their progress.